© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5:

Working With Family, Culture and Disability

WORKING WITH FAMILY, CULTURE AND DISABILITY

PACER Center • Session 5

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 2

Agenda

Welcome & Introductions Family Involvement & Teens “First Jobs” Family Contributions to Employment Beyond the Nuclear Family Surrogate Parenting Cultural Differences & Disability Perspectives Large Group Exercise: Scenarios Resources Questions & Evaluations

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 3

Disability and Family

Depending on individual family, having a relative with a disability may have a

positive negative, or neutral

effect on family quality of life.

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 4

Disability and Family Economics

Extra costs may arise from special diets, transportation, vehicle modification, recreation, adapted clothing, medical care, special services, wheelchairs, architectural modifications, and other needs.

Another cost is the reduced opportunity for families to make money because of their child’s disability.

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 5

Daily Care

In some families, the care needs of the individual with a disability are no different from other family members.

However, children with more severe disabilities usually do require more assistance and more supervision of their daily needs.

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 6

Parents of children with developmental disabilities andchronic medical conditions report:

Approximately 50 percent gave their child extensive assistance with grooming, and medical monitoring

One-fourth said their child needed 24 hour daily monitoring

A little more than half said they had a crisis requiring extraordinary intervention within the last month

Research Shows …

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 7

Additional Parent ResponsibilitiesMany parents of children with disabilities take onadditional responsibilities:

Help teach their children

Make sure their children get services

Work toward their children’s inclusion into the school and community

Facilitate social relationships

Create opportunities for recreation

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 8

Family Involvement and Teens

Positive parent involvement increases the likelihood of successful post-school outcomes for youth with disabilities.

Family involvement leads to better academic outcomes, reduced school problems, reduced high-risk behaviors, and increased after school involvement for youth with and without disabilities.

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 9

Families Prepare Students for Life After High School

Foster decision-making & self-determination skills

Promote self-knowledge and understanding of:

- their disability

- their accommodation needs

- their strengths

Help students set goals

Guide students towards skills needed to achieve their goals (e.g.. academic skills needed for post-secondary education)

Promote experiences & skills needed for work

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 10

First Jobs Exercise

What were your own “first job” experiences?

What role did your family play in those experiences?

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 11

Family Contributions to Successful Employment Outcomes

Job Assessment/Exploration

Finding Employment

Job Retention

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 12

Job Assessment/Exploration

Identify interests and strengths of youth

Collaborate in creative problem solving

Identify paid and unpaid work experiences

Streamline the vocational assessment process

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 13

Finding Employment

Use personal networks to identify job opportunities

Support an individual in their job search

Improve quality of placement and job satisfaction by helping to identify a good match between youth and job

Help family member prepare for job interviews

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 14

Job Retention

Helping a family member prepare for work eachday can include: Backup for personal assistance staff

Maintain assistive technology

Provide transportation

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 15

Job Retention (Cont.)

Foster natural supports in the community

Talk about everyday job-related frustrations

Problem solve challenging workplace situations

Identify early signs of serious problems at work

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 16

“Why Mothers Have a Tough Time”

If we are concerned, we are overprotective; if we are unconcerned, we are neglectful.

If we are involved, we are demanding; if we are not, we are detached. If we have high expectations we are unrealistic; if we have simple

aspirations, we set our sights too low. If we nurture generously, we are smothering; if we nurture less, we are

withholding. If we offer advice, we are controlling; if we refrain, we are disinterested. If we phone, write or visit often, we are pests; if we don’t, we are uncaring. If we help with tasks or give or loan money, we cultivate

dependency; if we don’t, we are unsupportive.

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 17

Family Involvement Principles and Strategies

Relationship building

Communication – Importance of genuineness and empathy

Welcoming atmosphere

Respect – Refrain from judging and labeling "challenging" families too quickly

Person Centered Programs

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 18

Beyond The Nuclear Family…

Parent and Family Terminology— Changing Definitions of Family:

Parents, children, siblings, and spouses

Include blended and non-traditional families

Grandparents, distantly related individual friends, neighbors, foster parents, or other significant adults in a young person's life may assume "parental” roles

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 19

Which Children Need Surrogate Parents?

Must be special education student or in need of special education

Wards of state Parents unavailable Parents unknown Parent requests a surrogate be named

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 20

Definition of Parent in Federal Regulations

Parent

Guardian

Someone acting as parent

Surrogate parent

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 21

What is the Role of a Surrogate Parent?

To act in role of parent

To represent the interest of the child with a disability in educational matters

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 22

Responsibility of School

Identify eligible children

Recruit potential surrogates

Provide for training

Appoint surrogates

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 23

Who Can Be a Surrogate Parent?

Can Be: Foster Parent Community Volunteer

Cannot Be: Employee of public agency involved in

educational or care of child Person with conflict of interest

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 24

What Must a Surrogate Know?

Federal and state regulationsDistrict structure and proceduresThe nature of the pupil’s disability and needsAbility to effectively advocate for an appropriate

educational program for the pupil

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 25

Family, Culture and Disability

Cultural differences and the role of parents and family in the lives of youth with disabilities

Western culture adopts definitions of disability established by our legal or professional institutions

Other cultures may define disability differently

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 26

Medical Western Model vs. Cultural Model

Assumptions:

1. Disability is a physical condition

2. Disability is an individual condition

3. Disability is a chronic illness

4. Disability requires a cure or “fixing”

• Disability is a spiritual condition• Disability is a group condition• Disability is a time-limited condition• Disability must be accepted

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 27

Disability as a Spiritual Condition

Examples: Disability is a punishment for past sins A child with a disability is a gift from God A child with a disability is an ancestor who has

come back in the family

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 28

Disability as a “Group” Condition

The youth is not solely responsible for its occurrence

Family members share responsibility for the occurrence of the disability

© 2004 • PACER Center • Building Program Capacity to Serve Youth with Disabilities Session 5: Working

With Family, Culture and Disability: Slide 29

Disability Must Be Accepted

For some non-western cultured families a child’s impairment is an act of God and is beyond human comprehension and ability to cure.